After much harassment encouragement, I entered the blogosphere to document the delightful (or otherwise) and unexpected moments of my younger daughter's life. Hannah was born in 1998. She surprised us with her extra chromosome, and continues to surprise us with her humor, intellect and obstinacy. She takes our breath away. As my elder daughter once wrote, when Hannah was born, our family went from ordinary to extraordinary.

February 24, 2009

Tucker Haas is a homeschooled boy who has a sister with cerebral palsy. His family lives in Charlotte, NC, where we used to live. Tucker created an adaptive swing for his sister. This video was made before Tucker went to New York and WON the Bubble Wrap Young Inventors Competition. Now that his patent has been filed, it's okay to show this clip. Tucker is the second person in his family to win the bubble wrap competition!

February 21, 2009

We rallied, and we made it! Both Hannah and I felt well enough to brave the circus. I guess I didn't really share that I was hit by the same bug. I forgot how much I appreciate a nap! I'll have to get me some more of those. (Forgive me. Sometimes the South affects my typing.)

Here's Hannah being a Strong Man

Our pals Emily and Katie were at the circus too!On the walk to the parking deck, Hannah was practicing walking straight and tall (she's trying to improve her posture). She said, "Wow! Look how much I'm growing. That's one reason I'm so popular." This totally cracked me up.

February 19, 2009

Hannah is hopeful that she'll be able to go to the circus tomorrow! It's one of her favorite things and she's been talking about it for months. She drew this picture a few days ago. I love how she thought of the trapeze artists' hair hanging down, and it's the first time I've seen her draw a good approximation of an animal's back leg.

But, clearly, she's not well yet. This is how I found her in the late afternoon. Asleep on the floor with a fever. Hopefully today will be the day where she feels better!

February 18, 2009

Since we're all still sick here, nothing has been going on. Hannah is slowly improving, but I'm not so sure she actually has/had strep. She should be all better by now, but instead she has congestion and a cough. Me too. Chris too. But we don't have the fever she did, nor the sore throat. We've got aching joints. James has something too, but he's away on a business trip all week, so I'm not sure what his symptoms are.

I started this post last month, but never really did anything with it. Since I'm not in a creative mood (cough cough), I'll just post it now, in a somewhat unfinished form.

When Hannah was about five years old she had some great ideas to add to Webster's Dictionary (I bet you didn't know that she/me/we are distantly related to Noah Webster, at least according to family lore. Also, we're supposedly related to President Andrew Johnson, the first president to be impeached, who also ranks as one of the worst presidents ever. Note to self: dig up documentation!).

Hannah knew the words "today" and "tomorrow". But she thought of a couple more that are quite valuable. "Tomorning" was the first. It really cuts down on having to say "tomorrow morning". Or, if you want to put something off until tomorrow you can say "I'll do it to-later". We all use these words in our house today.

There are other words that morphed into our family's lexicon because of some of Hannah's early articulation difficulties. She was unable to make a "y" sound, so she substituted "l". When we see something that's adorable, we say, "cloot" instead of "cute". Also, if something is beautiful, we say, "blootyful". Of course, we were careful not to use these when she could hear us. But now that she can say them correctly, she thinks it's so funny to hear about what she did when she was little. I had forgotten one of her classic morphed/short-cut words until Kate used it a couple weeks ago: Walloo? It's a shortened form of "Where are you?". When playing hide-and-go-seek we'd hear her say, "Tatie, walloo? Are loo in here?"

All those speech therapy visits, all that time working on oral motor skills...I'm glad that we did it, but sometimes I miss the cuteness of Hannah's early speech.

February 15, 2009

Thanks for all your well wishes! (And jokes, Jay! The two legged cow was a new one for us!)

Hannah's not any better (yet), but she was feeling so badly this afternoon that we bundled her up and took her to urgent care. Fever was 103--and that was with Motrin! Both the strep and flu tests came back negative, but when the doctor came in and examined her she immediately said, "This child has strep. No doubt about it."

I had looked at her throat several times over the past few days, since her throat has been one of her complaints. Without tonsils, there wasn't much I could see. But this doctor said that Hannah had a telltale strawberry mark on her soft palate.

So she's on meds now (and yes, we're using pro-biotics).

Chris woke up with a sore throat today as well, and I could see white spots on his throat. So he'll be needing to be seen by a doctor as well. He's got three tests this week, so he really needs to get better fast!

February 14, 2009

Hannah has come down with something--I'm hoping it's not influenza. She's aching and feverish, with a slight cough. It started last evening, and she was very weepy and tearful (what's the difference between those two words?). Since she slept through the night, I was hoping that she'd be better this morning. But, no. Her temp is hovering around 101. I'm a fan of letting the fever do its work, as long as she isn't too miserable. I did start her on oscillocosinum, which is a homeopathic remedy for flu. If it isn't flu, no harm done. If it is, then her body will already be working on fighting it.

I know she's not feeling too poorly since she's still telling jokes. She LOVES to tell jokes. The ones she makes up are just lousy. Complete non-sequiturs. But she has memorized more than a few good jokes. Our newest favorite is this:

What do you call a cow with no legs?

Ground Beef.

She uses this one as an old standby:

What do you call a fish with 10 eyes?

A Fiiiiiiiiiish.

She's also got lots of knock-knock jokes.

Knock knock!

Who's there?

Jose.

Jose who?

Jose can you see, by the dawn's early light...

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Knock knock!

Who's there?

Duane.

Duane who?

Duane the tub, I'm dwowning.

Maybe that's not such a good one for a kid with articulation issues!

Right now she's lying in my bed watching Charlie and the Chocolate Factory. She's even dancing a bit to the Oompa Loompa(s). A nice lazy Valentine's Day.

February 12, 2009

I'm going to have to behave now, because Natalie gave me an "award" (*blush*). She said some really nice things about me (or, at least, this blog). So now all these friends-of-a-virtual-friend are heading this way from all over the world. I'm kinda feeling popular!

The award is sort of like a chain letter...I am supposed to write about Five Addictions, and then pass on the award to five more bloggers. This is hard! I was talking to my son about addiction, and how I don't really have any. He told me that there are 38 known genes that play a part in addiction. Maybe I'm missing something genetically. I am really bland. At least in the addiction department.

But, I will do my best to live up to the award bestowed upon me. (I don't think it even has a name....is it The Addiction Award? That's not such a nice name now, is it?) Natalie didn't make this up...she was chosen because, I think, she is both charming and hilarious. I first found her on Caringbridge, when her younger son was fighting leukemia. She was even funny then, between the tears and fears. Fortunately, Finn finished first in his fight, and Natalie naturally turned to nurturing her remarkable writing on her blog here . (I'm sure I've impressed her with my admirable alliteration.)

So, now on to my addictions.

1. The Computer. This is my only real addiction, though lately I have been able to tolerate withdrawal for longer periods of time. This is partly due to the fact that my laptop has frequent temper tantrums, shutting down when slightly irritated (bad video card). It's also due to the fact that I'm supposed to be homeschooling my kid and people in this family expect to eat. I don't know what's up with that.

2. Dessert. Oh heavenly. Must be home-baked to receive the highest accolades, but I have been known to be happy to find the last crumbly Fig Newton if that's all that I can scavenge. After all, it is golden-flakey-tender-cakey, so that counts for something.

3. I am addicted to not cleaning. I really will go out of my way to avoid tidying up. It's getting harder because my two lackeys are technically adults now, and not home much, if at all. While Hannah is really good at her chores, it's really not fair to make her clean all the bathrooms, vacuum, dust, sweep, etc. I am fortunate that I am married to an enabler who enjoys washing dishes. He's the kind of guy who shows me how much he loves me by doing the laundry.

4. Punctuation. I really like punctuation. I use it generously, in every sentence, at least once. I'm quite fond of parentheses as well (though you might not have noticed). Punctuation is really a good thing. Period.

5. Since I am fresh out of further addictions, I will highlight one (or more) of Hannah's addictions. This is, after all, mostly a blog about her, so I feel I should share the award limelight with her.

5.a. Hannah is a recovering Wiggles addict. This addiction lasted for nearly seven years, four concerts, three CDs, four VHS tapes, and seven DVDs. She was in love with Murray FOREVER. It was painful for all of us.

Age 7

Age eight, in her Murray Outfit, "shopping" for Fruit Salad (yummy yummy) at the Children's Museum.

We really do appreciate how much The Wiggles taught Hannah. She learned language, movement, music, rhythm and bad jokes. She learned to use her imagination, role playing and more bad jokes. All useful skills. But now we rejoice.

5.b. Hannah has replaced this addiction with a fervent love for salami. She adores it. She could eat salami and muenster cheese for three meals a day. She'll eat it on crackers, or in a wrap. She'll eat it just plain, slapped onto a plate. The nice thing about salami? It's quiet. It doesn't involve giggly green dinosaurs or adult men pretending to have fun while driving a small big red car.

Uh oh again. Now I have to choose just five (5) other bloggers to whom I bestow this same Addiction Award.

1. Rechelle at The Country Doctor's Wife. She's really funny, and so is her sister:2. April at April Showers. I can only imagine what they were like when they were kids.3. Nicole at All4MyGals. Nicole has not been blogging as much lately since her youngest daughter was recently diagnosed with diabetes. I first found her blog (or she found mine) because we both have daughters with Down syndrome. Nicole has a wonderful ability to thoughtfully write about difficult emotional and spiritual topics. Sometimes after I read her writings I feel like I've been surrounded in love and acceptance.4. The Daily Lois. I can't get enough of this round baby. Another Down syndrome blog.5. Charissa at Country Living the Urban Way. Last year this remarkable homeschooling family adopted a tiny little girl with Down syndrome from Ukraine. When I say tiny, I mean tiny. Ava was about the size of a 10 month old, but she was four years old. It's a joy to see the family grow in love and learning as they bring a lost child back to life.

Must go to bed. My computer addiction has been satiated for now. It's nearly 2:30 a.m.! James gets up at 4:00 am for a business trip. I think I'll sleep through his alarm. No doubt I'll need to proofread this in the morning. Forgive any blunders. At least I know I've got the punctuation covered.

February 10, 2009

(Right after I took this picture Hannah looked at it and said, "That's beyond belief." This will make her later comment more relevant.)

The rainbow wires are connected to the junction box...

The junction box is (almost) connected to Molasses...Oh hear the words of the Mom...

This is so crazy. I am so impressed with my kid. She didn't complain once about all this stuff. Again. This is the third sleep study, and while she didn't have quite so many wires this time, I'm sure it still was a difficult time. We thank the beneficent, merciful neurologist who took the time to arrange alternative EEG adhesives because Hannah had asked about them--her only fear. When Hannah heard that there would be no "stickies" she said, "That's a relief! No, that's beyond relief!"

She was wired and ready for action, not sleep, so she wore her wires around while she colored and I read her joke book outloud. She thought she looked like the robot from an old Davey and Goliath show.

Getting ready for bed--almost done loading her up.

Her favorite part: the pulse oximeter!! Now she can play E.T. (red light on finger...'I'll be riiight heeere.')

I encourage you to click on the above picture so you can get a better idea of all the paraphernalia with which she was equipped. It all adds up to a great sleeping experience, don't you think?

She actually did very well, except for being extremely thirsty. Guess what? They had no straws. Impossible to drink from an open cup with the mask on. She woke up about every hour to get a drink. Fortunately they found a coffee stirrer, so she drank three cups of water through the stirrer during the course of the night. Built in Oral Motor exercises!

They cranked the humidifier as high as it could go, to keep her moist (the CPAP has a built in humidifier), but apparently she needed more. It was really hot in the room, and the mattresses were those vinyl hospital ones that reflect the heat back to where it came from. I had an identical bed right next to her, so I could pop up when she'd whisper (it's hard to talk with that mask on).

The good news is that she tolerated the CPAP quite well. She didn't rip it off in her sleep (what little she got), and she didn't complain about it. We should get the study results within 2-3 weeks and then, most likely, have her very own machine delivered.

The tech was excellent. He let Hannah complete her dream cycle before he woke us up (@ 6:15), which makes for a better arousal. He also had some good tips about getting the dried paste out of her hair. Don't add shampoo too soon. Let the shower soften it up for a good long time, then work most of it out before you add any soap. It worked like a charm!

We had our IHOP breakfast on the way home, and spent the rest of the day trying to fit in a very elusive nap.

February 8, 2009

Whew! What a week! Katie was home for a short break between her January term and the start of her last semester. We had fun having her home again. I think her favorite part was going out for Vietnamese food (a family passion!). But, maybe it was playing in the park on the first warm day of the year.

We also had our dear, fabulous, oh-so-cool, terrific friends Roxanne and daughter Shea visit us for a long weekend. Their new dog Sandy came to play with our two beasts.

The inflatable playground gave us all a good work out.

(Adult supervision required....hmmm, who would that be?)

The young girls went swimming at the gym while Roxanne knitted and I talked her ear off (as usual!).Throw in some painting, sunshine, drawing, hanging pictures on the wall (finally!), cooking, feasting, watching movies (grown-ups), and we're all worn out! The week went by too quickly!

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About Me

The Cast of Characters!

Hannah, a girl who meets her challenges.

Hannah loves to read, swim, play soccer, spends LOTS of time creating art and takes bass guitar lessons. She keeps us all on our toes!

Chris, the excellent big brother.

I don't think there is a kinder brother in the world. He is 24 and is working on his PhD in Chemistry at UNC-Chapel Hill

Kate, the incredible big sister.

Kate is a veteran Peace Corps volunteer in Jordan. She is working as a Police Dispatcher and is studying for an MBA.

James, the Fearless Leader!

Don't let him fool you, he's actually a real estate executive who manages corporate properties. But he does a nice job with the lawn, dishes and laundry too! I'm not complaining!!

Beth, The Crazed Mudder.

After 21 years of homeschooling, I'm starting to show some side effects! I always said my degree in Psychology and Animal Behavior would be good for something! Besides annoying my children, I spend a good portion of my spare time researching Down syndrome metabolism and cognition. I also enjoy mentoring families who are new to Down syndrome or new to homeschooling.

A Beast

Hazel is Katie's dog. She is named after a character in "Watership Down". She is a Wheaten Terrier, the only kind of dog we can own because bunches of us are allergic. Hazel is very sweet, unless you are a puppy and you irritate her.

A Younger Beast

Bunsen belongs to Chris. He is playful little guy and a quick learner. He reminds us of his Uncle Nelson.